Tobias' Recovery

Bottom line: Yesterday evening we thought Tobias was in danger of a re-bleed.  The nurses and doctor rushed to his room to check on him and in the end he had another CT scan to view the blood in his brain.  He ended up being okay and the doctor wasn't sure why he had shown the symptoms that looked dangerous.  Today was a calm day.  Tobias' vital signs were all in safe ranges and he opened his eyes more than yesterday, but he is still too drowsy to participate meaningfully in his therapies. Detail: I mentioned in an earlier blog that comparing this experience to a roller coaster ride is unfair to roller coasters.  This experience is more similar to the ruthless carnival ride that spins so fast that the riders' heads are pressed sideways against the backing grate.  Last night after the best day we've had for weeks, the ride spun out of control again.  Tobias had a calm day, successfully transitioned to breathing through his nose with the trache capped and had flexible arm

Bottom line: Tobias had a calm day.  He hasn't stormed today, but he hasn't woken up either.  The speech therapist capped his trache today and Tobias has been breathing through his nose without any help for several hours.  His muscles have been more pliable than previous days as well.  The rehab doctor is lowering some of the medication that contributes to his drowsiness, but must move in steps so that Tobias doesn't experience any withdrawal shocks. Look mom.  No breathing tube. Tobias is breathing completely unassisted. Detail: Tobias' storming episodes are in a waning phase apparently.  He is storming once every 12 hours.  His heart rate hasn't reached higher than 135, but he has been sweating and posturing.  His blood pressure reached 160 yesterday, but came down when the storming passed.  This is likely a result of the waxing and waning nature of brain recovery, but could also be a good sign that he is trending in a favorable direction.  The doctor changed the

Bottom line: Today was middling.  Tobias stormed once, but was peaceful for most of the day.  He had a good therapy session in the morning, but was wiped out by the medicine or the storming and couldn't keep his eyes open after the morning storm.  Katja and I met with the doctor and his team for a "family meeting" which helps to allay our concerns and make us comfortable with the decision to have Tobias treated in the rehab hospital. Detail: We arrived at the hospital today at 10am because I had a work meeting that ended at 9am.  By the time we arrived the physical therapist and occupational therapist had already done a joint therapy session with Tobias.  They reported that he was alert, flexible and able to perform many of the tasks that they set before him.  He tracked with his eyes and tolerated sitting up without setting off any storming episodes.  He was back in bed sleeping peacefully when Katja and I arrived and we cautiously looked at each other with the hope that

Do you remember what you were doing 25 years ago today?  In 1996 on September 27th on a day very similar to today, Katja and I married.  For the first time in 25 years we are celebrating our union in the same area where we tied the knot.  We would wish for different circumstances for our silver anniversary, but despite the difficulties facing Tobias, we are grateful for each other, for our children and for the joy we have experienced together.  25 years of marriage has taught me that love can grow through happiness and heartache alike and that everyone gets chances to go through both.  Our love now isn't greater than it was 25 years ago, but it is wiser, humbler and more understanding.  We know how lucky we are. Tobias had a better day than over the weekend.  He still stormed quite a bit and his occupational therapy in the morning had to be broken off because he was storming with his heart rate was in the 140s.  The poor lady wasn't used to her patients sweating like a wet spon

Bottom line: Sunday was the slow day in the rehab hospital that we expected.  No therapy appointments for Tobias.  He had a rougher day than the last two and spent much of the day mildly storming with high blood pressure and stiff arms and legs.  The stiff legs were a new development.  Normally his arms have been stiff, but the legs have remained flexible.  The doctors weren't actively present over the weekend and we are hoping that tomorrow the medication can get adjusted so that Tobias storms less and is more alert for his therapy Detail: As predicted, today is a slow day in the rehab hospital.  There are no scheduled therapy sessions and Katja and I are watching over Tobias.  The nurse and aid come in every two hours or so to reposition the pillows that distribute his weight so that he doesn't develop any pressure sores.  Protecting Tobias from pressure sores is difficult because there are so many potential points of failure.  Tobias can't tell us where his body hurts so

Bottom line: The second day of rehab for Tobias was much like the first, except there weren't as many therapy sessions.  He continues to storm, but not so much that his well-being is seriously threatened.  Tomorrow should be a very quiet day for him and we hope that he rests up so that he is ready for a full day of therapy on Monday. Detail:  Today was Tobias' second day in the rehab hospital.  It was a Saturday so his schedule was reduced.  Tomorrow will be even less active for him.  His condition was similar to yesterday.  He seems to be tired and in need of sleep, or at least he finds it too strenuous to stay alert.  His first appointment was with the occupational therapist in the late morning.  Katja and I tried to wake him up by speaking with him and I took him through his range of motion exercises, but he remained very stiff in his arms and didn't ever wake up. There is a large TV in the room with an Apple TV.  Yesterday one of the nurses' aides helped us to get N

Bottom line: Tobias started his first day of rehab today.  He had six session of therapy, but it was all too much for him and he slept through almost all of it.  We're told that this is pretty common and that after a few days, he'll build up enough muscle to stay awake longer and participate more actively. Detail: Today was the first day in the rehabilitation hospital.  Tobias had two appointments a piece from three disciplines (physical therapy, occupational therapy, speech therapy).  We also met with the case manager.  There was a printed schedule waiting for us and computer monitor with the schedule on it as well. In order to ward off any storming episodes the doctors doubled the dose of one of the medications.  It was supposed to not impact his wakefulness or ability to respond, but Tobias was not very responsive today.  His blood pressure was very low, however, which is a common side effect of the beta blocker medicine that was doubled.  Tobias' eyes were open for some

Bottom line: Tobias' medications were reduced yesterday to help him stay more alert during the day.  Unfortunately he stormed again today, or at least had serious storming symptoms.  The doctors have made more minor adjustments to his meds and are going to re-evaluate tomorrow.  Tobias was accepted into the specialized rehab program that works with promising patients who aren't yet ready for the normal rehab process.  He was approved by the insurance and moved to the rehab hospital on the same day.  Tomorrow he begins the next phase of his recovery in rehab. Detail: After several days of relative consistency and no news, today brought with it a lot of reportable activity.  First of all, Tobias was awake much more than previous days.  I have been calling the night nurse almost every night to get an update on Tobias.  For the previous two nights the nurse gave Tobias some oxycodone because he was sweating at night.  The nurse interpreted the sweating to be a sign of storming and

  Katja and I visited the third and final LTAC today.  It left us with a good impression, but there is no clear winner.  All of them have puts and takes.  The selection process may be a moot point, however, because there is a two- to three-week waiting period before LTACs can take new patients.  Due to the Covid situation all of the LTACs have lost nurses to larger hospitals to treat Covid patients and they can't staff all of their beds.  The LTAC we visited today has 40 beds, but they can only fill 20.  Tobias is making progress every day and by the time a bed in the LTAC opens up, he may be ready to get the bone replaced in his head.  By this time, Tobias may be ready to be admitted to the rehabilitation hospital so the LTAC may not be in his future.  Of course, he may require a much longer recuperation time so it's possible that he'll still have a long visit in the LTAC. The rehab hospital doctor visited us again today and they would like to induct Tobias into a speciali

  Katja and I arrived at the hospital later than usual today because we toured the LTAC closest to our house and had the chance this time to ask lots of questions.  The visit helped us to become comfortable with the step to an LTAC, but we still have one more LTAC to visit before we can make a decision.  The hospital sends someone in every day to check if we have been able to choose an LTAC.  Fun fact: the LTAC told us that they have a two-week waiting period before patients are admitted, so we may get a lengthier stay at the university neuro acute care ward than we had planned on. Tobias has a new nurse today and she had removed the wrist restraints that have been in place since the beginning to protect him from pulling out any of his lines or tubes.  He isn't really conscious so any pulling would have been inadvertent anyway.  I don't know if he is more comfortable or not since the restraints were very loose, but Tobias can move his arms freely now. The medical team had reduc

  Tobias rested well again today.  His left eye was open sporadically, but he only responded one time with a feeble thumb movement.  The physical therapist thinks that Tobias was tired from the PT work yesterday.  The two PT folks from yesterday had Tobias sitting on the side of the bed with his feet on the floor.  Given his condition, this was a huge undertaking and has exhausted him.  I interpret his open eye as the time where he is awake and he seems to add to his total wakefulness more each day. The main neurosurgeon came by today to answer some questions that Katja texted him.  It surprised me, but they are not going to put Tobias back on the brain stimulants.  He said that they are concerned that it will start another storming session and they want to avoid this, especially in an LTAC.  He confirmed that an LTAC is the next logical step for Tobias.  LTAC stands for long-term acute care.  These are mini-hospitals that care for patients who need a long time to recover.  He said it

Bottom line: We've finally entered the phase where not much new is happening day-to-day.  Tobias continues to make progress.  Today he managed to stay alert for 15 - 20 minutes and gave multiple thumbs-up gestures.  Katja didn't feel well today so I was on my own with Tobias, but when he was alert we Facetimed with his mom and he seemed to move his mouth when she asked him for a smile. Detail: So... full disclosure...  I was trying to add the photos of Tobias yesterday and somehow I managed to delete my entire post.  It wasn't the worst thing that has happened to me in the last say month or so, but it sufficiently deflated my enthusiasm that I opted for the quick post that you saw yesterday.  Today is a new day, however, and the sun has come up again creating a beautiful fall day so with this new energy I'm going to give you a few points that were covered in the tragic birthday post casualty. Tobias' heart rate has been in the 80s for much of the past several days,

Today is Tobias' birthday.  22 years ago he brightened our lives and he hasn't stopped bringing us joy ever since (not necessarily one long uninterrupted source of joy-giving, but joy none-the-less).  Rather than take up your precious time with a long blog post, I'm just going to say that we had a good day.  Much like the last few days. Please celebrate our son's birthday with us by enjoying some photos from better days.  We love you, Tobias, and we want you back. Hope over fear